Integral and Rewarding Role of an OT in End-of-Life Care

Michelle Waldman, University of Florida

My father was diagnosed with terminal cancer in October of 2019, which exposed me to the vital role that occupational therapists play in end-of-life-care. I, like many prospective occupational therapy students, shy away from that area of practice. This was especially true for myself because one of the reasons I transitioned from premedical studies to pre-OT was because I was overwhelmed by the medical field. However, with my father’s passing, I had a firsthand experience of the role an OT has in giving dignity to the patient and comfort to the surrounding family in end-of-life care. I hope to shine a light on this vital role by highlighting occupational therapy responsibilities and encouraging fellow students to consider this impactful area of practice as a career.

When my father was entering the last stages of his life, my family felt completely helpless regarding how to best comfort him. I saw an independent man who had provided for his family his entire life turn into someone who didn’t have the physical energy to stand up from his chair. Cancer had taken away so much of his independence and taken a toll on those who loved him the most. My mom in particular had taken the brunt of the stress, and 2 months before his passing she reached out to Cindy, a home health occupational therapist, for additional services. Little did I know how important that decision would end up being.

Thanks to my own academic interests, whenever Cindy came for an appointment, I was always observing. At the beginning of this process, I could not have told you what the role of an OT in an end-of-life-care setting was. I think that this is a big reason why so many students shy away from this subfield: the lack of understanding of its importance and role. Over the last 8 weeks of my father’s life, I learned that Cindy had two primary goals: to allow my father to regain some sense of independence, and to decrease caregiver burden by providing better methods for taking care of him. Cindy gave my father the most comfortable, independent lifestyle he could have while also saving the family as much excess suffering as possible.

Cindy began every visit with therapeutic exercises to help my father’s strength and balance. For example, she would instruct my father to trace the alphabet with his feet so he could get some blood flow to his lower extremities in order to improve participation in other meaningful activities. It is important to note that end-of-life-care treatment is about supporting the patient with comfort despite their overall declining health. I could see the progress my father was making little by little because even as his health declined, doing these exercises gave him the mobility to reach for a remote control or cup of water. These little things that we take for granted in everyday life were so important to my father as he could grasp the little bit of independence that the cancer was taking away from him.

The most impactful role that Cindy filled, however, was guiding my mother to the proper tools my father would need for his last stage of life. I watched her do an assessment of my house, and before I knew it, thanks to her aide, there were proper railings in the bathroom and bedroom, a ramp in my garage, and a chair that allowed us to raise my father without assistance. While Cindy continued to focus on my father’s strength, I found that she provided the most relief to the family members trying to take care of him. I personally witnessed how having this OT to answer hard questions on accessibility lifted a major load off my mother’s shoulders. My mother was crippling under the emotional turmoil of losing the love of her life. While an OT in this setting cannot completely eradicate the pain, they can help the pain become more manageable by giving some sort of organization to the disorder.

Many prospective OTs shy away from settings like hospice and end-of-life home health because of their unfamiliarity with this emotional practice area. However, it is a rewarding and important part of occupational therapy. I hope that by sharing my lived experience, everyone recognizes how important an OT is to both the patient and their family members. I will be forever grateful to Cindy; losing a parent is always going to be difficult, but without a doubt having an OT to take care of my father and assist the family was a real blessing. This has inspired me to perhaps one day pay it forward and help a grieving family in need as a future OT myself.

Michelle Waldman is a senior Neuroscience major with a Disability in Society minor on the pre-occupational therapy track at the University of Florida. She is currently a lab member in the Positive Transitions Research Lab led by Consuelo Kreider, PHD, OTR/L, focused on fostering the social functioning and self-management of individuals with neurodiversity transitioning into adulthood. Her personal interests include community service, music, and advocacy for people with disabilities. Her professional interests include maximizing OT’s function in end-of-life care, promoting disability inclusion, and being involved as many areas of OT practice and research as she can.